Second Opinions are Your Right!
Don't let a doctor intimidate you out of seeking a second opinion, whether the issue at hand is a new medication or surgery. I've heard far too many stories of IBD patients whose doctors are surgery-happy or don't give any guidance on how to care for oneself. While this was once more commonplace over the past few decades, as the prevalence of Crohn's/IBD has increased more doctors across health fields are understanding it better. However, I still find that 6 times out of 10, nurses, general practitioners, non-GI specialists, and other caretakers are not that familiar with Crohn's. In this day and age it is the patient's responsibility to speak up and make sure our voice is being heard!
Do Your Homework!
Because of our fast-paced society and a frazzled health care system where doctors don't have much time with patients and follow-up can be difficult, it is imperative that the patient do as much homework on his/her own as possible. I try to research and have all my questions written down in advance of an appointment, along with bringing a list of my medications, vitamins/supplements, and copies of any recent tests or labs. Keep a notebook or folder of these materials. I stick mine in the pages of my food diary. That way it helps me assess how a change in practice or medication affects my daily symptoms. I mark my annual colonoscopy and include the results as well. It makes everything easier to find.
Don't Underestimate the Consequences
I've seen it all. I've been prescribed the wrong medicine, been given the wrong medication in a hospital, been given a completely wrong and potentially dangerous diagnosis by a young, inexperienced doctor, and have been talked to in an insulting manner by an aggressive doctor. That's why it is so worth driving 200 miles for a good doctor. Never mind that you can claim a certain amount of mileage to and from medical appointments on your taxes!
My gastroenterologist is so incredible that I've been driving that far for a decade. He's been my doctor for 20 years, and is someone I completely trust, as well as being surrounded by a wonderful, caring staff of nurses and assistants. I recently have been looking for a new allergist locally, and am finding as that process begins all over again, that it can take time.
Hang in there and know that the right doctor is waiting - good luck in the search!
Resources
Crohn's and Colitis Foundation - Find a Doctor Search Function